Surgery day

Nicholas with Clarice and Rudolph, under the spell of silly juice

I got up this morning at 3:45 a.m. to get ready for the surgery today.  It didn't go as smoothly as I would have liked; Nicholas was on to us that something greater was going to happen today than the past appointments he has so bravely gone through.  He was not as compliant as usual; he cried in the shower, he cried getting dressed; he cried in the car.  All the while, Zo and I tried to stay stoic and strong.  He was first getting in to pre-op, and they gave him his "silly juice", which really helped him relax.  Then they took him away.  Then came the tears.

We were taken to a family waiting room, and we then got to meet the infamous Dr. Hanley.  The nurses and fellow doctors we have met all talk about him like he is a god himself.  And they say these things with real conviction, not sarcastically.  So we sat down with him and he started at the beginning, explaining Nic's defect and really helping us understand what we are dealing with.  He was very real and compassionate.  He said that they will go in and carefully monitor his left ventricle until they get the pressure gradient just right and then band the pulmonary artery.  He said that we are doing the right thing. 

He also explained that usually about  75-80% of the time they will have to re-band.  This was kind of news to me; I was under the impression that they only have to reband 20-25% of the time.  So most likely we will have a second open-heart surgery to reband, and then another 6 months of waiting, and then about a year from now, we would do the double switch.  He explained that this is not a guarantee; that it might not even work.  But the alternative is to watch and wait, and at some point in time Nicholas would be in full heart failure and need a heart transplant.  So what is worse???

For now, we will wait as patiently as possible.  I will write more later when we see our boy.

Pre-op for Pulmonary Artery Banding

We are here in our little hotel room just trying to stay preoccupied while we wait for tomorrow.  We had a busy day of pre-op testing and meetings; everything went smoothly for the most part.  We got to the hospital at 7:30 this morning and started with an echocardiogram, followed by an EKG.  Nicholas did awesomely for these tests.  After that, we had 2 chest x-rays, and then met with the anesthesiologist Physician's Assistant, Chloe.  We had a Child Life Specialist, Jeanie,  come and take Nicholas on a tour while we had our first meeting with the Surgical Physician Assistants.  They explained what we should expect after the surgery, and gave us a list of possible complications during surgery.  They gave us chlorhexidine wipes that we have to wash him with tomorrow morning before we leave our hotel.  They answered all of our questions.  After that, we did the last test I was dreading, the blood draw.  Last time we were here, he kind of freaked out, but they did such a good job that he didn't realize what had happened.  This time, he remembered the blood draw room and it was really hard to hold him there (four of us) while they took several vials of blood.  He was burnt out after that and begged us to go back to our hotel where he could just watch a movie and have a little "siesta".  We slept for 3 hours!

All of our questions have been answered and we are about as prepared as one can be before giving your child up for this life-changing open-heart surgery.  One thing that was interesting to me was that the Pulmonary Artery Banding procedure is relatively simple; on a scale of 1-10 the Physician Assistant rated it at about a 2.  The entire procedure should take about 1-2 hours, but Nicholas will be away from us for about 4 hours.  He will likely be in the cardiac ICU for a few days, then he will transfer to a regular recovery room for a few more days.  Hopefully we will be home by Christmas. 

I am so thankful for all the prayers and well-wishers leading up to this point.  Mostly I have kept it together up to this point, but I have had moments where I just want to cry.  If it is possible to be glad, I am glad that Nicholas is in such good hands, and I am glad that there is a surgery to make his life better.  I am glad that we have family helping us out and taking care of our other kids so that we can focus on Nicholas.

Speaking about the other kids, I really miss them.  Kayleigh is starting finals tomorrow, Beau doesn't think he can focus to go to school, and Sienna apparently keeps looking out the window looking for us.  I hope they are all ok. 

Note the cute dinosaur slippers on the picture on the right: Auntie Ny got those for him the day before we left and they have been a huge hit!  He wore them around the hospital and had many admirers and made many people smile.  Nicholas was pretending that he was a dinosaur (specifically a t-rex) all day.  He was his usual animated self, and I am glad he had a good day (minus that dreaded blood draw). 

It's not about turkeys!

We made it through Thanksgiving, and I would like to acknowledge that I have much to be thankful for.  Often it is easy to feel sorry for ones self and feel like everything really stinks.  But I have a husband who loves me and my kids who bring such happiness to my life.  Really, there is not much else that matters and no matter what happens, I will know this to be true. 

Lots of people have something that they probably want to wish away. I know my wish would be for Nicholas to have a perfect heart.  But he doesn't.  So I can be thankful that he is in good hands and I know that we are being the best parents we can be.  I am thankful that we have found doctors who can give him hope for a normal life.  I am thankful for all the people who have been and will be praying for our family.  I am thankful for the support of our families and friends.  Thankful.....Full of thanks.... 

Thank You!!!

Ignorance is Bliss

Yesterday we got the official instructions in the mail from Stanford.  I cautiously read through them and I, being one who desires to understand the ins and outs of everything, feel reassured that we are in the best hands and feel confident that we are doing the best thing for Nicholas.  My dear husband, however, feels even more scared about the future after reading these pages and pages of information. 

This is the scariest thing either of us have ever faced in our lives.  Nicholas has never looked sick.  Only when he is really active can you hear him struggling to breathe and his lungs rattle and he coughs.  But otherwise, he is just a normal kid.  So it is very difficult to accept that you are about to put your child through a very scary, and somewhat unknown outcome of a surgery.  He has no idea what is going to happen here in about a month.  But it will surely change all of our lives forever.  I can only hope and pray that it is successful and that Nicholas will be one huge step closer to having a long and normal life. 

I will continue to research and learn about this defect to fill my craving of knowledge.  But sometimes I think it is just as simple as being present, not filling your mind with all the details, and that is the contribution you make to the situation.  Lorenzo and I are like that.  He is my rock and has been there for me since the day I met him.  I don't doubt that we will make it through this...we just will deal with it in our own ways.  I will be the rock for this one.

So.....I did it!!!!

Today I ran my first half-marathon!  Training for these long runs is very time-consuming, so I had never even ran a full 13.1 miles up to this point.  I felt great until about mile 11.5, and then my body (mostly my knees) started to kind of ache.  But I kept going, and finished with a time of 2:24:38.  Not the fastest runner out there, but I finished!  I made it running the entire way, too.  Which was not my plan.  I figured I would have to walk/run/walk/run...but I just kept going.  I did stop for one "potty break" at mile 4.  Wow, what an accomplishment for me.

When I left the house this morning, I got all teary-eyed.  When I crossed the finish line, I cried. I just got so emotional because I fully dedicated this feat to my Nicholas.  I feel so passionate about raising awareness for CHD's.  I don't know exactly how I'm going to do it, but I'm going to do it.  I envision a fun-run with Congenital Heart Disease as the cause.  I just feel like people are so uneducated about CHD's and so many people will have a child born with a defect.  I surely didn't ever think this would be part of my life.  But it is, and I am trying to figure out how to make a difference, even if a small one.

To those of you reading this, I challenge you to do something physical....make your heart happy.  I realized today that you don't have to be first place; you don't have to win the race to succeed. Rather, you have to set a goal and work to achieve it.  Start small.  Walk one mile.  Then jog one mile. You can do anything if you put your mind to it and your heart in it.

My Nicholas may never be a runner.  I don't know what his future holds.  But from this point forward, I will value MY heart and make it happy from now on.

Hmmmm....Makes Sense (From October 27)

So normally I would be a work right now, but instead I am home with the little kids.  Nicholas woke up at 3:15 a.m. vomiting dinner from the night before.  The funny thing is, is that Sienna actually slept the entire night and when Nicholas started stirring, I was very surprised that she hadn't woke me up like she has been at 1 a.m. for the last week straight.  So I guess we just can't catch a break here!  Needless to say, Nicholas threw up every 15 minutes or so for a couple of hours and here we are at home for the day.

It kind of gets me thinking...it makes a lot of sense that the docs at Stanford want him (and Sienna) to be home for three weeks before and after surgery so he isn't around any bugs that are making the rounds.  So we will have the little kids home from around Thanksgiving until after the New Year. 

Gotta Get Moving!!!

So much to do!!!  I have been feverishly trying to get my "ducks in a row" now for weeks, even months.... It seems like every day there are phone calls, appointments, activities, etc, and never a dull moment to top it off!

I am anxiously anticipating what the future holds, but have made some new friends along the way.  I attended my first support group meeting this week for parents of CHD kids.  Mended Little Hearts is the group.  I think it will be a tremendous support for me and my family.  I met several other mothers who have already gone down the road of surgery....set backs....progress....and all the various roller coaster of emotions that come with having a "heart child". 

It is interesting to me....all the parents I have met are just like me.  Normal, hard-working, every-day average citizens.  You wouldn't look at us and think we have children that have such serious issues with their hearts.  We are parents that want the best for their child(ren).  We are moms who did all the right things while we were pregnant.  We didn't choose this.  But we are fighters and will do whatever it takes to give our kids the best treatment and advocate to make their lives better.  I have a renewed spirit and am going to try to raise awareness and do my part to help other families who have a child with a Congenital Heart Defect.

My first opportunity to raise awareness is coming up this weekend.  I have been so-so training to run a half-marathon for some time now, and will be completing my first one on Sunday.  I am going to wear the shirt from Mended Little Hearts so other runners will see it.  This is going to be my new "cause".  Every running event I take part in, I am going to wear something relating to CHD.  My boy didn't choose to have a bad heart; I can make my heart healthier each time I exercise, so I am dedicating this first long run to my Nicholas.